Sunday, January 21, 2018

Class-action suit against the French government filed by Lyme patients


http://rmc.bfmtv.com/emission/maladie-de-lyme-300-malades-vont-deposer-plainte-au-penal-des-janvier-1331597.html


IN FRANCE – 300 people with Lyme disease will file criminal complaints in early January 2018 against the State, the National Agency 

for the Safety of Medicines and Health Products (ANSM) and the National Reference Center (CNR) in Strasbourg for influence peddling, 

abuse of company or government assets, concealment of abuse of government or company assets,endangering the lives of others, 

violation of the principle of independence of experts and conflict of interests.


This complaint aims in particular "to uncover the links of interests maintained between the National Reference Center of Strasbourg and the laboratories". The complainants believe that screening tests are unreliable.

 

The director of the CNR, is an expert mandated by the State and the ANSM, who also collaborates with the laboratories that manufacture these tests and participates in the validation committees of the tests. He may be charged with criminal offense, influence peddling, corruption and misuse of corporate assets. 

 

The plaintiffs also target the State and the ANSM for endangering the lives of others and manslaughter (patient suicides) and also lack of vigilance in the choice of experts and the quality of tests.

 

According to one of the plaintiffs' lawyers, by imposing a single testing technique, a single screening protocol and favoring a certain number of laboratories, the health authorities "did not play their role of supervisory or regulatory authority, but actually became employees of the pharmaceutical industry."

 

Today there are tens of thousands of patients who have not been diagnosed and many of them are in absolutely catastrophic medical, material and moral situations. 

 

The lawyers claim the responsibility of the actors of public health, but also  $611,345.00  of damages per patient. 

 

"Absurd" tests:  Today, the Elisa test is used to find out if a patient has Lyme disease. Elisa is the only test that exists in France to detect the disease. If it is negative, the exams stop there for the patient. If it is positive, the doctors give a second test to the patient, much more precise, the Western Blot. Except that the first test detects only 3 to 5 different bacteria that can cause Lyme, whereas in reality, there are more than ten. To find out if they have Lyme or not, some patients have to go to veterinary tests, much more accurate, or go to other countries like Germany, where the tests are more advanced.

 

Some doctors do not stop at the negative test and continue to see patients to determine if they have Lyme or not, but they are then sued by the College of Physicians and Health Insurance for 'non-compliance'. The lawyers therefore ask for the withdrawal of these tests that they consider "absurd".

Monday, January 8, 2018

The antioxidant Ebselen prevents neurotoxicity

The antioxidant Ebselen prevents neurotoxicity and clinical symptoms in a primate model of Parkinson's disease. - PubMed - NCBI



This looks promising. 

-Bob




Thursday, January 4, 2018

Weird EYE problems related to Lyme and Bartonella infection

Some of the "Weird" Eye Problems 
Associated With Lyme Disease & Bartonella

Lyme patients (approximately 5% +/-) often describe symptoms related to their vision that are dismissed or misdiagnosed by eye doctors not trained to recognize these problems.  A pat on the head, ignoring your questions, a rolling of their eyes, or a declaration of "all is well" when you know it isn't will let you know they don't know.  

If the symptoms or patient's problems are acknowledged they are often reported to be related to something other than an infection related to Lyme disease.  To note, Bartonella is sometimes the cause of "weird" eye symptoms too.  

If you experience any "weird" eye/brain symptoms you should see your local eye doctor.  If, after the typical causes for these various symptoms have been ruled out, there doesn't appear to be an explanation for the mild to severe visual disturbances you are experiencing, you are not alone and there is still hope.

These "weird" eye/brain symptoms, some of them described below, can best be addressed by treating the Lyme related infections that cause eye/brain problems such as meningitis, encephalitis, brain swelling, optic nerve damage, toxins, etc.

See the rest of the page at this site: 

Saturday, December 16, 2017

IVIG and small fiber neuropathy

Small fiber neuropathy (unmyelinated fibers in the skin and the autonomic nervous system) can account for the bulk of the pain and autonomic symptoms in Lyme patients. Until now there have not been any treatments for this other than symptomatic.

However, for large, myelinated fibers that become demyelinated, these lesions can be reversed with IVIG treatment.

Interestingly, lots of Lyme patients have both.

IVIG can get approved by insurance as a treatment for demyelination (as initially diagnosed with EMG-NCV studies) but so far insurance will not approve IVIG for biopsy proven (simple punch skin biopsy) small fiber neuropathy.

Because Lyme patients usually have both, treatment gets approved to treat the large fiber neuropathy but lo and behold, the small fiber stuff (pain and dysautonomia) can also clear.
So finally the attached article demonstrates this. Note that it comes from Harvard and does not mention Lyme disease- that is what got it published.

This is especially important as the EMG-NCV studies will not detect small fiber problems at all, and more importantly, will miss possibly half the cases of large fiber neuropathy, thus preventing insurance coverage and needed treatment. In contrast, skin biopsies specifically stained to see small fibers picks up a much higher percentage of cases, offering hope for a more sensitive way to get diagnosed and treated.

Whether this will be enough to get insurance to cover IVIG for small fiber neuropathy is yet to be seen.
Please share this with all the docs (Barbara- can you send this out to the ILADS group? Put it on the website?) and especially the neurologists you may know.

Thanks!
Dr. B

Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA
Sent from my LapTop

Thursday, December 14, 2017

Antitrust Lawsuit Pushes Chronic Lyme Disease into Health Care Limelight

Here is a 182-page document written and (c) by LDA (Lyme Disease Association) discussing conflicts of interest in Lyme research and patient care. It is not up to date, and probably there are many more conflicts of interest since this was published in 2001. But it makes for interesting and educational reading, so I am posting it here. This is copyright LDA, and I post it here only for readers' education to promote better understanding of Lyme and associated diseases. 

-Bob 

Thursday, November 30, 2017

Mayo Clinic Trained Physician - Dr Miller Speaks out about Lyme Disease


  
What's happening
Read more at LymeHope
Read more at LymeLight Foundation



















  
  

Monday, November 20, 2017

Thanksgiving in the Lyme world



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Lyme gratitude list, 2017
Along with new and continuing challenges for the Lyme community, there is also much to be grateful for this Thanksgiving season. Here's some of what we're giving thanks for.

MyLymeData offers leap forward for Lyme research 

Almost 10,000 people have enrolled in MyLymeData, our big data study aimed at targeting research to the real-world needs of Lyme patients.

Furthermore, scientists from UCLA and Claremont McKenna have received a three-year, $800,000 grant from the National Science Foundation, to continue their work of predictive analytics, using data from this project. This will provide an immense benefit to Lyme patients, helping point the way to more promising treatments.

LymeDisease.org's Lorraine Johnson has presented preliminary MyLymeData findings to researchers, doctors and patients at professional conferences and our own MyLymeData2017. (MyLymeData2018 will be April 7--mark your calendars.)


Broader national news coverage of Lyme and TBDs 

Major media outlets have paid more attention to Lyme-related issues this year. Among them: a five-part investigative series from NBC New York called The Lyme Wars; WBUR radio series called "Losing to Lyme"; PBS News Hour; and Rolling Stone magazine. In addition, independent journalists Mary Beth Pfeiffer and David Michael Conner continue to provide excellent coverage of many facets of this complex topic.

In addition, in May, Fox5NY received an Emmy award for its groundbreaking 2016 news special, "Lyme and Reason: The Cause and Consequence of Lyme Disease."


New York State Senate hearing on Lyme disease

On August 29, the New York State Senate's Task Force on Lyme and Tick-borne Diseases held a public hearing, which was streamed live to a national audience. In response, the task force called for a statewide action plan and more funding to combat tick-borne diseases in New York. 

Moreover, we're grateful for you, members and friends of LymeDisease.org. With your support, we continue our efforts to empower Lyme patients through advocacy, education and research.

We wish you all a Happy Thanksgiving, and look forward to continuing to work together in the future.
LymeDisease.org, publisher of The Lyme Times, is the Lyme community's leading source of news, information, and health policy analysis. 

SAVE THE DATE! November 28 is #GivingTuesday. It's a chance to donate to the good work of LymeDisease.org and have your contribution matched--making your dollars go much further. Stay tuned for details.
     
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